{"title":"Harnessing Social Media to Develop Conceptual Domains of Quality of Life for Adolescents With Advanced Cancer.","authors":"Andrea Johnson, Kimberley Widger","doi":"10.1002/pon.70155","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Many adolescents will not survive their cancer diagnosis and will live with advanced cancer (cancer i.e. difficult to cure). Due to the advancement of cancer therapies, many adolescents will live with advanced cancer for long periods of time. Enhancing QoL is a well-established goal of their clinical oncology and palliative care however, there has been little research to conceptualize QoL in ways meaningful to them. There has also been a lack of QoL research focused on the inclusion of their voices and experiences into QoL construct development.</p><p><strong>Objectives: </strong>The aim of this study was to develop proposed conceptual domains of QoL relevant to adolescents with advanced cancer.</p><p><strong>Methods: </strong>This study was a qualitative study grounded in Interpretive Description. We used social media content created by adolescents living with advanced cancer to inform the development of QoL domains. Adolescents are increasingly using social media to share their experiences and we believed social media would facilitate access to rich data.</p><p><strong>Results: </strong>235 social media posts recorded by 14 adolescents were included in the analysis. This analysis generated domains relevant to the QoL of adolescents with advanced cancer: (1) Perceived Health, (2) The Lived Body, (3) Emotional Wellbeing, (4) Normalcy, (5) Purpose and Direction and (6) Re-Orientation.</p><p><strong>Conclusions: </strong>The QoL of adolescents with advanced cancer is poorly understood. This research has generated unique conceptual domains of QoL relevant to this population of adolescents. These concepts will inform the future development of a patient-reported outcome measure (PROM) that can measure their QoL.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":"34 5","pages":"e70155"},"PeriodicalIF":3.3000,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12031689/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Psycho‐Oncology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1002/pon.70155","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"ONCOLOGY","Score":null,"Total":0}
引用次数: 0
Abstract
Background: Many adolescents will not survive their cancer diagnosis and will live with advanced cancer (cancer i.e. difficult to cure). Due to the advancement of cancer therapies, many adolescents will live with advanced cancer for long periods of time. Enhancing QoL is a well-established goal of their clinical oncology and palliative care however, there has been little research to conceptualize QoL in ways meaningful to them. There has also been a lack of QoL research focused on the inclusion of their voices and experiences into QoL construct development.
Objectives: The aim of this study was to develop proposed conceptual domains of QoL relevant to adolescents with advanced cancer.
Methods: This study was a qualitative study grounded in Interpretive Description. We used social media content created by adolescents living with advanced cancer to inform the development of QoL domains. Adolescents are increasingly using social media to share their experiences and we believed social media would facilitate access to rich data.
Results: 235 social media posts recorded by 14 adolescents were included in the analysis. This analysis generated domains relevant to the QoL of adolescents with advanced cancer: (1) Perceived Health, (2) The Lived Body, (3) Emotional Wellbeing, (4) Normalcy, (5) Purpose and Direction and (6) Re-Orientation.
Conclusions: The QoL of adolescents with advanced cancer is poorly understood. This research has generated unique conceptual domains of QoL relevant to this population of adolescents. These concepts will inform the future development of a patient-reported outcome measure (PROM) that can measure their QoL.
期刊介绍：
Psycho-Oncology is concerned with the psychological, social, behavioral, and ethical aspects of cancer. This subspeciality addresses the two major psychological dimensions of cancer: the psychological responses of patients to cancer at all stages of the disease, and that of their families and caretakers; and the psychological, behavioral and social factors that may influence the disease process. Psycho-oncology is an area of multi-disciplinary interest and has boundaries with the major specialities in oncology: the clinical disciplines (surgery, medicine, pediatrics, radiotherapy), epidemiology, immunology, endocrinology, biology, pathology, bioethics, palliative care, rehabilitation medicine, clinical trials research and decision making, as well as psychiatry and psychology.
This international journal is published twelve times a year and will consider contributions to research of clinical and theoretical interest. Topics covered are wide-ranging and relate to the psychosocial aspects of cancer and AIDS-related tumors, including: epidemiology, quality of life, palliative and supportive care, psychiatry, psychology, sociology, social work, nursing and educational issues.
Special reviews are offered from time to time. There is a section reviewing recently published books. A society news section is available for the dissemination of information relating to meetings, conferences and other society-related topics. Summary proceedings of important national and international symposia falling within the aims of the journal are presented.
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